Breast Cancer Spread to Uterus
 

MJs husband:
Greg, My heart goes out to you and your wife. Let he know she is not alone.

To all:
I feel bad that I have not been active with HER2 support group for quite a long time. Although NED for almost 5 years, I was experiencing other problems, including back/hip pain and depression. I tried logging on a at various times but ended up having trouble with my logon ID somehow changed to “JoanneS” instead of “Joanne S” and my emails wouldn't go through. Somehow I got through to PinkGirl a few months ago. Thanks PinkGirl for initiating the fix a while ago. I hope all my HER2 buddies will forgive me for being away for so long.

My last MRI and CT Scans in December 2011, revealed NED. A month ago, I started having abnormal bleeding on and off. I had a pelvic, pap smear and ultrasound---all with normal results. I then had a new PET Scan and then D&C surgery two weeks ago. Last week I got bad news that the D&C pathology and the PET Scan findings revealed cancer in my uterus.

I searched and scoured the internet for any info relating to BC mets to uterus (BCTU), but found nothing. I found info relating to Tamoxifen risk for uterine cancer-- I don’t have uterine cancer and I’m not on Tamoxifen---I have breast cancer to the uterus. I know once you have BC you are at risk for metastasis so I felt blessed for being NED and felt I will be strong and handled getting this news quite well.

I had chemo induced menopause and was only on Tamoxifen a few months. I’ve been on Arimidex for over 4 1/2 years and I have breast cancer metastasis to the uterus; so yes, it’s definitely very uncommon. My BC oncologist referred me to a gynecological oncologist surgeon, which I saw last week, in hopes of scheduling a hysterectomy ASAP, but after having a pelvic by this specialist, I was in big-time shock to find out that I have tumors outside and beyond the uterus; and therefore, I am not a candidate for a hysterectomy. The cancer spread to the uterus, cervix, pelvic ligaments, nodes, and my right greater trochanter (top of femur)-and possibly the glutemus maximus muscle and bladder. I was absolutely shaking inside everywhere. It just made me wonder how so many others here have so much strength. I admire them so.

I'll be going for another MRI next week to get a clearer picture of all involvement. Although my primary breast cancer was ER+/PR+, and HER2+, I found it odd that this metastasis is ER+/PR+ and negative for HER2. My oncologist indicated that the cell characteristics can change when they decide to park and grow in a new location in the body. Evidently the Arimidex did it job for quite a while but isn't anymore. I started Exemestane today. Along with all the new anxiety of the dx ---ugh---I’m not surprised I’m not feeling very well so far. I start Affinitor in two days. Anyone been on either Exemestane and/or Affinitor?

Greg, I am sending huge hugs to both you and your wife and wish her continued improvement. And I just want to say to you: Thank You! You are an absolutely thoughtful, wonderful, caring man, and so appreciate you for posting about your wife and being on this group! Although your wife’s dx aren’t exactly the same as mine, reading your posts has helped me and brought me comfort in knowing I’m not alone. Hope it brings your wife a lol comfort too. Thank you Greg!

Re: Breast Cancer Spread to Uterus
 

Dear Joanne

I am very sorry about this new and unexpected challenge. I know you will whip the beast back once again. We are all here for you.

Re: Breast Cancer Spread to Uterus
 

Hi Joanne....I, too, am so sorry for your recent news. I can only imagine how you feel. Please accept my cyber hugs and feel my love and prayers said for you. You are strong and like before, you will beat this.

Prayers and love.......

Re: Breast Cancer Spread to Uterus
 

Joanne, I am sorry to hear of this setback. My thoughts are with you. Where in the Detroit metro area do you live....message me, if you would like. I bet we are close, I live in Novi now. Ceesun

Re: Breast Cancer Spread to Uterus
 

Joanne,
I am really sorry this chapter opened in your book. May you feel well and be well.
Hugs
Karen

Re: Breast Cancer Spread to Uterus
 

Hi Joanne,

Add me to the list of those who are very sorry to hear of this unexpected develpment. I'm sure you are in expert care and they will have a plan for you soon.

Sending big hugs and prayers.

all the best
caya

Re: Breast Cancer Spread to Uterus
 

Joanne,
Thanks for your kind words. MJ does not like to visit these sites so I'm kind of on here for her to find out more information. When we first found out her breast cancer had spread to her endometrial region, I couldn't find anyone who had that happen. The research I did showed that it is very rare. It was kind of frustrating. The even wrongly diagnosed her with endometrial cancer in the beginning because it doesn't happen that often. After testing, they proved it to be mets from the original her2. She has inflammatory bc so it spreads very fast. When they thought it was endometrial cancer, they staged it at III2c, despite clear scans 3 months prior to that.
I'm sorry to read about what you are going through. It's all very scary. In fact, MJ had her 3-month PET/CT scans on Monday, Sept. 17. They called and left a voice mail on her cell the next day. She couldn't find the courage to listen to the message all week or weekend. She had surgery to have her right breast lifted to match her mastectomy breast yesterday. Somehow, between her grogginess from the general anesthesia and the Oxycontin, she was finally in a state of mind to listen to her voicemail. It was great news that she is NED. Believe me, I have so much anxiety in all of this as well. It's rough. Hang in there and keep positive thoughts.

~Greg

Re: Breast Cancer Spread to Uterus
 

JoanneS,

So sorry to hear your news. I just had an endometrial biopsy (negative) and a pelvic ultrasound (waiting to hear). Reading your story was rather alarming. Oh, I hate that about tests - they don't always reveal the cancer.

Such shocking news. I wish you NED with your treatment.

Re: Breast Cancer Spread to Uterus
 

Hi Joanne, My Heart goes out to you also. Please know that you are in my prayers. I also live in MI and if there is anything at all I can do for you I would be more than willing to. Gods blessings to you and your family.

Re: Breast Cancer Spread to Uterus
 

Joanne,

I'm so sorry you are having to deal with this set back. My thoughts and prayers are with you and I know you will face this with strength. Please know we are here for you.

Re: Breast Cancer Spread to Uterus
 

Dear Joanne S. Of course I recall you.

Just feel bad for you at this latest turn of events. Since Afinitor is so new, there are only a few here who have taken it. I think HER2NEWBIE's wife had it in trial.

Looks like they want to give you the latest, and too bad Herceptin won't be on your drug possibility list.

Sending you thoughts for a strong reponse and the strength and will to boot it back once again.

Re: Breast Cancer Spread to Uterus
 

Dear Joanne this is sad news. I understand it is a shock for you. And for us also. So unexpected after 5 years and so unusual. Your oncs are trying a good treatment. Stay strong. I am sending Hugs. Michka

Re: Breast Cancer Spread to Uterus
 

Joanne! I am so bummed to read your newest and down right rotten news! How dare that cancer #*%@ invade your life again! Please keep us posted over the next few weeks on how things are going. This is a tough blow for you and for those of us who love you here on Her2Support. I will be praying for the miraculous!

Re: Breast Cancer Spread to Uterus
 

I'm so sorry about the mets and wishing you the very best.

((Hugs))
Paula

Re: Breast Cancer Spread to Uterus
 

Joanne I am so sorry to hear your news - you must feel completely shocked!
I was on a Bolero trial and we think I had the everolimus/affinitor - blind trial so not certain.
I also took it with vinorelbine but I believe the most significant se's are mouth ulcers - more than 50% and quite severe - this was also my experience. I am happy to share by experience with the drug if you want more information. It seems to be very effective in hormone positive women.
Sending you love.

Re: Breast Cancer Spread to Uterus
 

Hi Joanne. I remember you as well, and am so sorry to hear the beast is back. I will keep you in my prayers that with your new tx, you will again be back to NED soon.
gentle hugs...

Re: Breast Cancer Spread to Uterus
 

Ceesun and Pray,
I am on the East side of the state, in Macomb Township.
Perhaps we will meet in person some day.
Pray, Where are you in Michigan?
Huge Hugs!

Re: Breast Cancer Spread to Uterus
 

Thank you ALL !!!!
I've been on the Exemestane for a couple of days now and doing much better on it than I was the first day. The Affinitor is being shipped to me and I should received it tomorrow. I am so soooo very fortunate and grateful that my RX coverage pays for most of it. When the pharmacy called to schedule the delivery, they told me it costs over $7,000 for a month supply. Yikes! Keeping my figures crossed and praying that these drugs work miracles for me.

I can't tell you how much your kind words and support means to me---I have an idea that you probably already know.

All of you close to my heart, thoughts and prayers. I am sooo lucky to have YOU! Huge hugs xxxxxxxxxxxx Jo

Re: Breast Cancer Spread to Uterus
 

Greg, Thank you. So glad the phone call was great news!!!
Prayers for continued NED for MJ !!! Congrats and Bless You MJ!!

Re: Breast Cancer Spread to Uterus
 

Hi Joanne, First let me say what a wonderful, thoughtful, caring and loving woman you are!!!!! The way you carry yourself on this site you just jumped right back into supporting everyone here when you yourself has just taken a huge hit. I would consider it a great honor to meet you some day.

I live on the west side in Farmington I am about 50 min. from you. I also have a lot of family on the east side in Chesterfield, Sterling Hieghts, Macomb, and Roseville. Name the time and date! If there is anything at all I can do for you please don't hesitate to ask!

Maybe Ceesun if you are up to it we could all meet up together. Just let me know. I believe the last time we chatted you were in Dearborn? Novi is right next store to me. Gods blessings to you also. You are also always in my prayers.